On Hawking, the Walkout, and Words on Sunday, March 18, 2018

Dr. Stephen Hawking, a professor of mathematics at the University of Cambridge, delivers a speech entitled "Why we should go into space" during a lecture that is part of a series honoring NASA's 50th Anniversary, Monday, April 21, 2008, at George Washington University's Morton Auditorium in Washington. Photo Credit: (NASA/Paul. E. Alers)

I awoke on Wednesday to the news of Stephen Hawking’s passing. I immediately wanted to add my voice to the chorus on social media celebrating his life. But language stopped me. My first thought was, “Our world has lost one of its greatest minds.” That is an acceptable thing to say about someone who is able-bodied. But to refer to someone who is disabled as “a mind” makes their body invisible, and promotes ableism. I would have to reframe my thoughts. Also I wanted to link to an article from a reputable news source. The first site I visited said that Hawking “suffered” from ALS. To assume someone with a disability “suffers” is ableist. Just like using the phrase “confined to a wheelchair.” My child has a neuromuscular condition, and gets around in a power wheelchair. If you have spent time with him, you know he does not suffer. Nor does he feel confined. These are assumptions made about the disabled from the outside.

I forget these are things I didn’t use to know. Things that I need to say because other people do not know them yet, and it is important. The language we use to describe one another matters. Especially when it is the privileged using language to describe someone who is part of a marginalized community.

I skimmed articles from three or four other news sources and was thrilled that “suffered” only appeared in one. And nowhere did I see the word “confined.” This is progress. Some of the stories did seem to think that part of Hawking’s legacy included the Academy Award given to an able-bodied actor for portraying Hawking in a film. And here we come to another problem. “Why?” you might be asking. Why is it a problem that an able-bodied person plays a person with a disability? You think to yourself, Well, Eddie Redmayne did do a very good job. And so I ask you this: when was the last time you saw a disabled actor play an able-bodied character in a major motion picture or on network television? You’re stumped, right? So, if actors with disabilities can’t play people without disabilities, and they can’t even play people with disabilities, then what work are actors with disabilities getting? That’s a problem.

There were plenty of other concerning posts and news stories, some suggesting that he was brilliant in spite of his disability, that it was miraculous that he had a sense of humor and a zest for life considering his circumstances. One illustration showed his empty wheelchair with communication device parked amidst the stars and an unrecognizable silhouette of a man walking out into the cosmos. As if he is now free, fixed. Folks let’s face it, there was nothing broken about Stephen Hawking.

So what is it that made Stephen Hawking stand out? Why did he have such an impact? Sure, he was a brilliant scientist. He made revolutionary predictions and discoveries about black holes—in fact that they are not entirely black—that they emit radiation. This was revolutionary in physics. But it’s more than that. It’s that he brought science to the people, made it more approachable. And perhaps he did the same for disability—in being this iconic figure who also used a wheelchair and a communication device.

Something else significant happened on Wednesday, hundreds of thousands of students across the country walked out of their schools to protest gun violence. This was the largest student protest in this country since the Vietnam War protests in the 1960’s. It feels significant to me that these two events coincided. The passing of this brilliant and important human, and children and teens banding together to have their voices heard. The past gives way to the future. Stephen Hawking began his important work as a very young man. History shows that youth are the future, that youth make waves and make way for the future. 

As far as I know, nine-year old Oscar does not know about the walkouts, does not know about the March for Our Lives scheduled for March 24. People who know we have attended some marches in the past year have asked if we are attending. I don’t want my child to have to know that children have been gunned down again and again and again in their schools over the last handful of years. I don’t want my child to be afraid. His school practices lockdown drills in case “bad guys” get in, and that hypothetical is enough.

Oscar has said several times in the last few months, “We’ve been to a women’s march, we’ve been to a science march, we’ve been to a climate march, and we’ve been to a race march. When are we going to go to a disability march?” He says, “It’s my kind our president makes fun of. I want to go to a disability march.”

I saw posts from friends with disabilities on Facebook indicating what a role model Stephen Hawking had been to them as children, because he was the first famous person with a disability in the public eye they could really look up to. Could see themselves represented in. Another news story suggested he was as brilliant as he was because of his disability. That he had to do things differently than others—he couldn’t write his theories and equations on a chalkboard like his peers, which enabled him to think in a completely different way.

Maybe there is no relationship between Stephen Hawking’s passing and the student walk-out. Maybe they are just two random events that happened on the same day, that both occupied space in my head and heart that day. But they are now tied together in my memory.

I leave you with Stephen Hawking’s words:

“For millions of years, mankind lived just like the animals. Then something happened which unleashed the power of our imagination. We learned to talk and we learned to listen. Speech has allowed the communication of ideas, enabling human beings to work together to build the impossible. Mankind’s greatest achievements have come about by talking, and its greatest failures by not talking. It doesn’t have to be like this. Our greatest hopes could become reality in the future. With the technology at our disposal, the possibilities are unbounded. All we need to do is make sure we keep talking.”

Wrapping up the 2017 Chapter on Monday, December 18, 2017

Reading has informed much of our year. Oscar and I spent many of his third grade mornings reading the Percy Jackson series, a modern-day Greek Mythology adventure, out loud while we waited for his bus to come. We looked forward to our reading time every day and plowed through the first book, and quickly moved on to the others. Oscar talked about it often and convinced David he should read the series. By the time Oscar and I got partway through the fifth and final book, David caught up with us. So, one weekend in the spring the three of us snuggled up on the couch and finished the series out loud together.

And in the fall, the day after Oscar’s 9th birthday, Rick Riordan, author of the Percy Jackson series, came to Rochester and we had the opportunity to hear him speak.

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Above: They gave out t-shirts to everyone who attended the event! Right: We arrived two hours early in hopes of getting in to the “sold out” free event, and it worked!

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I have always loved reading out loud—so much so that before Oscar was born, I developed a class for young children that was based entirely on me reading many picture books out loud (and then doing  some projects around them). Once Oscar was born, we started reading to him almost immediately, and delighted for many years in the range of picture books we enjoyed together. By the end of first grade, Oscar was reading to himself fully independently, and he no longer wanted to be read to. David and I were so proud, and also completely crushed. Here was our child engaging independently in this activity that means so much to us as individuals, but here he was, no longer willing to have us be a part of reading. Luckily, after a few months time, he regained his willingness to be read to.

When he was younger Oscar used to scare easily, and we’d always have to look ahead in a book so he could be prepared for what was coming, or he would watch shows sometimes with the sound off, so as to not get startled (and for the most part he did not watch movies at all until his third grade teacher introduced the class to Willy Wonka—then his interest in movies took off). So, I hadn’t been sure what would happen when we started Percy Jackson, if it would be a little too much for him. And there were times he didn’t want to read it right before bed. But once we got through the first or second book, his threshold for edge-of-your-seat adventures had increased significantly.

Partway through reading Percy Jackson, we started talking about the idea of reading Harry Potter. Oscar had heard so much about the books over the years, and was fascinated by them, but had known they would be too scary when he was younger. David and I had always looked forward to the time when we would read the Harry Potter books out loud to Oscar, because we are such big fans ourselves. In fact, I mentioned this idea of us reading the books to him so many times over the years, I worried I said it so often that when the time came he would want read them on his own just to spite me. Once we finished Percy Jackson we took a bit of a break from reading out loud together, but were still thinking about the idea of starting Harry Potter before too long.

One early spring morning, just as Oscar was getting on the bus—he was already on the lift raising up—he says, “Oh by the way, Mr. Bozek is going to start reading Harry Potter to the class today.” I was dumbfounded. This couldn’t possibly be true! (Later that morning I wished I had taken him off the bus and started Harry Potter with him right then and there!). But it was true, and it catapulted us into a Harry Potter reading frenzy! His class read the first chapter that day and we read the second chapter that night. The next day in school they read the second chapter and the first part of the third. Since the third chapter is when all the letters from Hogwarts magically arrive, I insisted on re-reading it aloud, much to Oscar’s chagrin, and then we read the fourth chapter. All week it was like a race to stay ahead of the class, but the weekend allowed us to plow forward. And re-reading each chapter in school was a delight to Oscar because his teacher had the illustrated version, and brought another level of magic to the story.

Oscar loved the book as much as we hoped he would. He talked about it constantly and regularly forecasted what he thought might happen next. We wasted no time diving into the second book, and then the third. We took a short break before starting the fourth, and another break before we started the fifth, which we are currently reading.

Diagon Alley!

Diagon Alley!

So naturally, when we went to the SMA conference this year, which was in Orlando, we took a day to go to Harry Potter World at Universal Studios. We spent 12 hours there, and all three of us were mesmerized by the magic of it all. Even my mom, who has not read the Harry Potter books, was pretty impressed. Oscar was so dazzled and delighted (and truth be told, I was pretty wide-eyed with a child’s wonder myself), and that day remains one of the main highlights of Oscar’s year, for sure!

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Unveiling of the wand.

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Oscar and Ghi Ghee inside King’s Cross station, on platform 9 3/4.

 

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HOGWARTS!

 

 

And naturally when it came time to plan Oscar’s birthday party, he knew he wanted it to be Harry Potter-themed. Since I run the youth programs at Writers & Books, and since we run a Harry Potter camp every summer where we turn our entire building into a version of Hogwarts, it was easy enough to borrow some things from work, in addition to creating some of our own wizarding world decorations, in order to decorate our house.

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Professor McGOnagall, Professor Dumbledore, and Harry Potter even made appearances at his party.

Professor McGonagall, Professor Dumbledore, and Harry Potter even made appearances at his party.

 

 

 

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And then when Halloween came around, he knew he wanted to be his favorite character from the books: Sirius Black. And he decided he should be riding a hippogriff, naturally. Luckily, one of Oscar’s friends was a hippogriff for Halloween two years ago and the family generously offered to let us borrow their exquisite hand-made wings, and mask.

 

 

 

 

 

 

 

David and I had some exciting literary experiences this year, also. I continued working, for a second year, with my creative nonfiction writing class/group. In February I attended the AWP conference (basically the largest writers conference that exists) for the first time. Here I am with Nadia and Julie, two of the writers from my amazing writing group/class, waiting for Chimamanda Ngozi Adichie and Ta-Nehisi Coates to start their talk (one of the highlights of the conference for sure).

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And this year, after having been part of the cast of Listen to Your Mother: Rochester in 2016, I joined the production team with this incredible group of women. It is remarkable to me to be a part of a production that showcases the two things I care most about in this world: motherhood and the writing/telling of true stories. (Save the date for May 12, 2018 and visit www.rocthemic.org for more info)!

Corrie, Sarah, Sally, Monica, & Emily

At he beginning of 2017 David set himself a writing challenge to work on certain short story projects each month and made some great headway. And this fall David had the chance to meet one of his favorite authors, Michael Chabon, who came to town for the Jewish Book Festival:

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In addition to Percy Jackson and Harry Potter, here are some of the other books one or more of us has especially enjoyed reading this year: Empathy Exams by Leslie Jamison, Americanah by Chimamanda Ngozi Adichie, Underground Railroad by Colson Whitehead, Moon Glow by Michael Chabon, The Faraway Nearby by Rebecca Solnit, No Man’s Land by Eula Biss, Magnus Chase: The Sword of Summer by Rick Riordan, The Last Apprentice (Revenge of the Witch) by Joseph Delaney, Wing and Claw: Forest of Wonders by Linda Sue Park.

We look forward to more adventures, literary and otherwise, in 2018.

 

More highlights from 2017

Attending the Women’s March in Seneca Falls (birthplace of women’s rights) with dear friends:

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Amazing Teachers:

Oscar attended the Special Olympics for the first time this year, and while the event he participated in was disappointing (the whole day was disorganized and Oscar raced against manual chair users—no contest), the highlight of his day was that his third grade teacher attended and spent much of the day racing him on the track!

Oscar attended the Special Olympics for the first time this year, and while the event he participated in was disappointing (the whole day was disorganized and Oscar raced against manual chair users—no contest), the highlight of his day was that his third grade teacher, Mr. Bozek, attended and spent much of the day racing him on the track!

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And here is Oscar with his fourth grade teacher, Mr. Ranney. Brighton has blown us away with incredible teachers every single year. Oscar’s added bonus this year is that he gets to bond with his teacher as a fellow wheelchair user!

 

Big Birthdays! Both my parents celebrated their 70th birthdays this year and we had a wonderful time throwing them each parties. (Though failed to get any group shots during the parties showing each of their amazing groups of friends from over the years).

My dad's brother and sister both surprised him by driving up from Baltimore for the celebration!

My dad’s brother and sister both surprised him by driving up from Baltimore for the celebration!

Happy Birthday Ghi Ghee!

Happy Birthday Ghi Ghee!

 

4th grade is providing great opportunities for Oscar to explore the musical talents he has inherited from David. He is playing percussion in instrumental music and has joined 4th grade chorus!

4th grade is providing great opportunities for Oscar to explore the musical talents he has inherited from David. He is playing percussion in instrumental music and has joined 4th grade chorus!

 

Attending the Mark Bradford show at the Hirshhorn in DC was a major art highlight for David this year—and Oscar & I loved it, too!

We continue to travel at least once a year to Johns Hopkins to see SMA specialists in neurology and pulmonology. This year, at the conference, we ran into Dr. Tom Crawford, Oscar's neurologist, in Disneyworld!

We continue to travel at least once a year to Johns Hopkins to see SMA specialists in neurology and pulmonology. This year, at the conference, we ran into Dr. Tom Crawford, Oscar’s neurologist, in Disneyworld!

 

 

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Oscar’s 3rd year at MDA camp was spectacular, once again. His new counselor this year, Michelle, was amazing, and has continued to stay closely connected to our family since camp!

And we are delighted to still have silly opportunities with Briana, Oscar's camp counselor from the first two years, and her fiance (CONGRATS!), Brad!

And we are delighted to still have silly opportunities with Briana, Oscar’s camp counselor from the first two years, and her fiance, Brad! (Congrats!!!)

 

 

Great times at Keuka Lake with dear friends this summer!

Oscar pretends to drive the boat during our great weekend at Keuka Lake with dear friends this summer!

Viewing the eclipse!

Viewing the eclipse!

Oscar continues to love the pool and do amazing work twice each week—he now swims his full 45-minute session with no flotation device at all!

Oscar continues to love the pool and do amazing work twice each week—he now swims his full 45-minute session with no flotation device at all!

 

 

 

 

We finally got to meet our incredible cousin Ruth this summer!

We finally got to meet our incredible cousin Ruth this summer!

Music in Our Family on Wednesday, April 12, 2017

Tonight, I was reminded about a blog post I’ve been meaning to write, as I heard the conversation coming from Oscar’s room at bedtime out to the kitchen where I was repairing one of the harness straps on Oscar’s power chair (it took geometry and tweezers to do it, I was pretty proud of myself for accomplishing it in the space of about ten minutes). I’ve been meaning to write about music in our family. The conversation was Oscar telling David with surprise that most of his friends don’t like rap, and the few that do like artists Oscar has never heard of. He went on to say, with a real tone of incredulousness and disappointment in his voice, that none of his friends had ever heard of Run-D.M.C. I could feel David’s pride in his boy from all the way down the hall.

Music has been in David’s blood since he was little. It is the thread that has run through everything about his life since he used to examine his dad’s Bob Dylan and Rolling Stones record covers (yes, I mean vinyl) as the music played when he was younger than Oscar. I could go on and on about this—the many ways music has mattered to David, but I was reminded via an email exchange with my writing group this morning that a blog post can be something dashed off without too much work, too much craft, and in under 750 words. I forget this sometimes. I think that’s why it’s been so long since I have posted.

I will tell you this—in 1994 when David and I first met, one of the first things that happened is that he loaned me his REM CD Automatic for the People. It wasn’t until later that I learned what a big deal this was. David didn’t loan CDs to anyone, and he most certainly did not loan REM CDs to anyone. To this day I still love that record.

I wanted to write in the fall to tell you that we took Oscar to his first concert. We did it our style—meaning we drove out of town to hear a band that meant a great deal to all three of us—all the way to Detroit to hear the Icelandic band Sigur Ros. Oscar came into the world listening to them, and for a solid year when he must have been about 5, he fell asleep listening to them every night.

The concert was in a stunning 1920’s theatre with dragons carved into the walls, enormous deities flanking the sides of the stage and ornate chandeliers in the lobbies and performance hall. The sound was perfect—we had brought protective headphones in case it was too loud for Oscar, but the balance was perfect. There was a stunning light show which varied with every song and moved throughout the evening with a pitch-perfect fluidity. And the music exceeded every expectation we had—and David and I had seen them once before, so our expectations were pretty high. The show ended at 10:45 and we walked the 15 minutes back to our hotel, stopping at the corner store for a snack on the way. We floated home all 300 miles the next day. We couldn’t have provided a better first concert experience for Oscar.

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And then it hit us: how will we ever follow this up? His first concert was perfect. It will only be downhill from here.

Less than two months later a series of miracles (including several remarkably generous and kind individuals—one of whom was my mom—and one in particular who pulled some incredible strings) came together, and three tickets to Yo-Yo Ma, playing with our own RPO, materialized. Oscar listens to Bach’s cello suites, as played by Yo-Yo Ma every night as he falls asleep, and asks us in the middle of the night to start the CD over. This has been true for at least 2 years now. When we first heard he was coming to town we tried to get tickets. I even tried a back channel when the traditional route didn’t work. We resigned ourselves to the fact that Yo-Yo Ma would be in town, but that we would not be able to see him.

As it turned out, we had seats in the dead center of the orchestra, just far enough to have a clear picture of the full scope of the stage, but close enough to truly see his expressions as he played. Watching the way he embodied the music, and truly collaborated with all the other musicians on stage was nothing short of a gift. And he played one of the Bach cello suites as an encore! The next gift came when Oscar and I were given tickets to the private reception after the concert and Oscar got to meet Yo-Yo Ma. When Oscar told him that he listened to the cello suites every night, Yo-Yo Ma said, “Those are my favorite.”

I don’t know if most kids would understand the magnitude of getting to meet one of the world’s most renowned musicians, but days leading up to the concert Oscar kept saying, “I can’t believe I get to MEET him. Getting to see him is amazing enough, but I’m going to get to MEET him.” He was on cloud nine, and for quite some time after the show as well. He has a framed photo on his night table of him and Yo-Yo Ma that the RPO took. And I snapped a few with my phone…

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Since then Oscar has started listening to Hamilton and has memorized most of it. He says he wishes he could just bump into Lin-Manuel Miranda on the street, start singing Hamilton with him, and then take him to lunch (“He seems like such a nice guy, you know what I mean?” Oscar says regularly). He does love Run-D.M.C., Mos Def, Tribe Called Quest. He’s been a Beatles fan since he was a year old. And his first favorite music was Charles Mingus—at five months if we put on one particular Mingus album Oscar would stop whatever he was doing and stare at the speaker. I’m proud of my boy’s eclectic and thoughtful taste in music. And deeply grateful for David in the way he helps foster that in our family.

What It Must Be Like: Oscar Starts Third Grade on Friday, October 14, 2016

I woke up with a bit of a start at 2:23 Saturday morning, after the first week of school. That was the moment that the new school year hit me like a ton of bricks. That was the moment it dawned on me, really, that this is the first time Oscar has been in a school setting where no one knows him already. In our district the transition from second to third grade means moving to a new school building. Yes, his PT (physical therapist) knows him, and this is huge, because she holds a ton of knowledge about his needs and has the skills to provide training to others. But she is not in the classroom with him—and she is not even in the building every day. My head was spinning about third grade for a good two hours in the very early of Saturday morning.

img_3141I found myself wondering what it must be like to be the family that goes to the evening orientation in the spring, receives teacher placement in mid-August, visits the teacher and drops off supplies in late August, and sends their kid off on the bus on day one. We did do all of these things. But our circumstances require much more of us.

Most kids have a teacher. Oscar has a team (teacher, one-on-one aide, occupational therapist, physical therapist, and often the school psychologist and/or assistant principal joins in). We started preparing for third grade in the winter of second grade. In the spring David and I toured the new school with the assistant principal. Then we had a team meeting, then the CSE (Committee on Special Education) meeting in May (attended by Oscar’s second grade team plus OT for third grade, assistant principals from both outgoing and incoming schools, and the Pupil Services Director for the district). This is the annual meeting where we formally discuss Oscar’s IEP (Individualized Education Plan, which is a legal document stating needed accommodations at school) for the coming year.

Throughout this process we discussed things like accessibility of the new school—including Oscar’s desk and the lunch tables. We discussed gym class adaptations, Oscar’s stander and the two-person lift (Oscar now weighs enough that by OSHA guidelines one person is not allowed to lift him to transfer him), what kind of testing adaptations we want to lay the groundwork for, the growing importance of technology in Oscar’s education (i.e. using an iPad with Dragon voice recognition software or Cowriter word prediction software as his writing load increases). We talked about germ control, adaptations in special area classes, a potential modified homework plan. The bathroom was a major topic of conversation. Where would Oscar use the bathroom? Which bathroom would allow him enough privacy, enough space for his wheelchair, and be close enough to his classroom that he wouldn’t miss a lot of class when he goes? Would it be a faculty bathroom or a student bathroom? Single stall or community-style?

We were confident. Things had gone so well with the primary school. We were simply moving to a new building within the same district. And Oscar was excited. He kept saying, “It’s bittersweet. I’m really going to miss Mrs. Beato (his first and second grade teacher), but I’m really looking forward to French Road (the new school).” The meetings laid the groundwork; the next part would be extensive training for staff before the school year started. Partway through the summer I was informed that Oscar’s new one-on-one aide had been identified and that she would come to a PT session over the summer to meet Oscar and begin some training. I was thrilled to begin this process earlier than the last few weeks before school started. It would give everyone (Oscar, the aide, and me!) some breathing room to get acclimated.

As we approached the last week of PT services for summer, which was in the middle of August, I asked, “Which day will the new one-on-one be coming to PT?” I was then told no one had been hired yet. This left me confused, and concerned. It turns out the person who had been selected as his aide had decided to leave the district, and now the district had to go through its hiring process, listing the job for a set period of time before holding any interviews. David and I went into panic mode. How would this possibly allow enough time to accomplish all that needed to be done before the start of the year? We were careful not to show any worry in front of Oscar and remarkably he was pretty calm about the whole thing.

So what does it mean to be Oscar’s one-on-one aide? What is involved? It means providing enough support so that Oscar can be successful at school, can have the equal access to his education everyone else does. But it also means knowing when to step back enough so that he has the maximum amount of independence. This is a very fine balance. If there is a cutting project at school, does one cut out the pieces of the project for Oscar, saving significant time and energy, or let him have the independence and pride of doing it himself, but having him fall behind and possibly have his hands get fatigued? There is no one black and white answer. This is one small question of many that come up each day.

Working with a one-on-one also requires a good bit of vulnerability and trust from Oscar. He is relying on this person to care physically for his body as he would, if he could. To physically move his body through space. To reposition his legs, or scooch him up or shift him in his chair, to get his jacket and other cold weather gear on and off. To take him to the bathroom—which, as he gets older, becomes a more and more private affair. And then to take care of all of the “stuff” in his day: unpack his backpack, set out his snack, put his binder away, set up his lunch each day, uncap his markers, reach the items in or on his desk and around the classroom that he can’t, be on the ready with hand sanitizer at all times. In fact, watching out for germs is a primary piece of the job, since illness can be more serious and more dangerous to a kid with SMA than to a typical kid.

It has been trustfall after trustfall sending our kid out into the world. When he was two we sent him to a special needs daycare that had years of experience caring for kids with much more complex medical needs than Oscar, and which his trusted PT had recommended to us. It was terrifying to let others besides family care for our child for the first time, but we had confidence they were up for the job, and they were. And Oscar loved it!

A year later when he started preschool—a two-and-a-half hour-a-day program—we had countless planning meetings and training sessions attended by what felt like the entire staff of the preschool. Over a period of time Oscar got to know these people, and they got to know him—all before the formal start of the program. Another major step, but one we all were prepared for.

Two years later, the level of planning to transition him from preschool to kindergarten was comprehensive. We had many meetings and many, many visits to the school. Various staff made home visits and visits to his preschool. Oscar had lots of time to acclimate to the new environment and get to know new staff. He also—and this was huge—had one of the special education teachers from his preschool follow him to kindergarten to be his one-on-one aide. So, he already had an existing relationship with the person who would be there for him each minute of the day. She stayed with him all through kindergarten and for the first half of first grade. Partway through first grade she accepted a teaching position within the building and there was actually a period of about a month in which Oscar had two subs trading off days to serve as his one-on-one, before the new person was hired. But even then his teacher, the school nurses, OT and PT and countless other staff already knew him well, and knew his needs well. When the new person was hired she had the A-team for training—all of these people that knew Oscar so well already.

Training. What happened this year, with the hiring of a new one-on-one aide at the last minute, at a new building where no one was yet familiar with Oscar, was that we had three days before the start of school to complete all of the training needed for day one. Oscar and I spent his last three days of summer vacation at school. He and I were both disappointed about this. I took the whole last week off work so we could spend time together. I also knew, long before we knew anything about a missing one-on-one aide, that we would most likely need to spend some time at the school that last week. I just had not anticipated how much.

Oscar loves school and was very excited to meet his new teacher, find out who was in his class and see some friends, so the first day was fun for Oscar. In all we were there for about four hours between the meet-the-teacher hour for everyone, a break in between in which I took Oscar to the bathroom and we learned that the bathroom that had been suggested for his use wasn’t actually going to work (the “accessible” stall was not actually large enough for a power wheelchair)—very important discovery!, a team meeting, and the beginning of training after the meeting. Since Oscar’s new one-on-one was a new-hire to the district she had some obligations to fulfill to complete her hiring process—which were inadvertently scheduled for exactly the same time as the meeting and training sessions. So, we literally met her for 30 seconds that first day. Not cool. Nonetheless we were able to go over some very important information with the teacher, OT and PT, school nurses, school psychologist, and assistant principal. I had quickly typed up a two-page handout of vital information to pass out. And then Oscar’s wonderful PT and Oscar and I were able to demonstrate use of the stander to these members of the team, and to familiarize them with the different functions on Oscar’s chair.

That night is when Oscar got nervous. He had made a plan: he would meet all these new people the first day and get to know them a little, then he would teach his aide and the nurses how to take him to the bathroom the next day, only he hadn’t gotten a chance to get to know his aide that day. I let him know we would all work with him, follow his lead, practice the bathroom without actually undressing at first.

So, the second day we met the nurses and the new aide and the assistant principal in the bathroom (we had finally found the best one to use!) to walk them through all the steps involved in taking Oscar to the bathroom (to honor his privacy I will not share those steps here!). Oscar’s PT then taught everyone how to do a two-person lift, should the need ever arise, and we began training for the one-on-one aide on the stander (this is an involved process that requires a lot of repetition to learn). After about two hours of intensive training that day it was time to move on. Oscar and I had a picnic lunch in the car and then went to buy the few remaining items on his school supply list. Once that was done we had a little spare time before he had to be at aqua PT so I took him out for ice cream. He was exhausted. He could hardly lift the spoon to his mouth and was starting to melt down. He actually asked if we could skip swimming. Our little fish, who would spend 4 hours at a time in the water if he could, who takes such pride in the amazing things he can do in the water, who benefits so deeply from his time in the pool, was done for the day. I canceled an hour before the appointment and we went home and snuggled on the couch and watched episodes of Odd Squad.

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The next day was Friday and our last chance to get everyone, especially the aide, up to speed. We spent another couple hours practicing the bathroom for real, practicing going in the stander, and showing his aide how to lift his joystick so he can pull into his desk all the way, how his special set of markers works, talking through sanitizing practices throughout the day, and other little details.

We did it! We got through enough for Oscar to be able to start school the following week. It was intense, exhausting, rushed. But as has been our experience so far in our district, everyone was engaged, thoughtful, dedicated, caring.

There are many important conversations we didn’t have time for, like talking about what SMA is, and what it means for Oscar. Or the sometimes fine line between providing Oscar everything he needs and giving him unnecessary special treatment. Or what kinds of language we have found useful around kids and their questions about Oscar and his chair and other equipment and his abilities.

Oscar is loving third grade. He adores his teacher, who has a similar sense of humor and a fun and engaging tendency toward dramatics the same way Oscar does. They seem to be a great fit for each other. The team as a whole, it seems, is going to be great. There have been some bumps along the road, some of which might have been avoided had we had a slow and steady preparation over the summer, versus a crash course. But Oscar is holding his own. He is speaking out and speaking up, teaching people what they need to know about him, and about taking care of him. I was impressed to hear him report on the first day of school that he had reminded his aide about washing down his lunch table with a Clorox wipe before unpacking his food—I didn’t realize he took the germ control issue as seriously as David and I do! Sometimes I am sure his speaking up is coming out with a bit of a demanding tone. At first I worried about this, and questioned him about how polite he was being. Then I realized, and remembered, he is just barely eight. The fact that he can speak up for himself is tremendous. I certainly didn’t know how to do that at his age.  I have always been introverted and those who don’t know me well might even call me shy—or certainly they would have back then. I am so grateful Oscar did not take after me in that way. He will learn the value of being polite all in good time. For now I will rejoice that he knows how to say what he needs, and how he feels. That is a quality that will serve anyone well, but a quality that will serve Oscar—who will have to rely on others for many of his daily needs—especially well.

Since the start of school there have been many emails back and forth, a couple meetings, and many conversations at home. The bonus of our special circumstances is the chance to get to know the adults who are working with Oscar every day in a way that other parents don’t get. And these meetings and emails and conversations have given me and David and Oscar all confidence that he has a great team working for him, with him. Nonetheless I find myself wondering what it must be like to simply follow the standard schedule of preparing for a new school year…

 

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